Feb 8, 2012

Should A Caregiver be Truthful or Kind?

Today I bent the truth to be kind, and I have no regret, for I am far surer of what is kind than I am of what is true. -- Robert Brault

By Bob DeMarco
Alzheimer's Reading Room

Should A Caregiver be Truthful or Kind?
Recently, I had an interesting and wonderful conversation with Susan Frederickson, the Caregiver Program Specialist, for the Area Agency on Aging of the Permian Basin (Midland, Texas).

Susan is full of knowledge and has a deep understanding of Alzheimer's caregiver life.

We talked about a long list of issues that Alzheimer's caregivers deal with each day, and today I decided to write about "Lies".

About how difficult it can be when a person living with Alzheimer's asks a question that if answered "truthfully" is likely to cause sadness, confusion, or might be met with challenging behavior.

The issue.

Is it more important to be truthful and cruel; or more important, to be kind?

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It is easy for me to understand why an Alzheimer's caregivers feels the need to tell the truth to someone living with Alzheimer's even if the truth can be hurtful.

After all who wants to be known as a liar? Persons who lie after often considered to be deceitful, untrustworthy, and are usually "looked down on".

Most people pride themselves on being honest, and for being known to be honest.

To tell the truth or lie for the sake of the person living with dementia, this is a dilemma for many  caregivers.

How do you respond to mom when she is constantly asking for dad, a husband who has been dead for many years.

Do you redirect the conversation? Or, do you give an honest, truthful answer?

Mom, dad is dead.

Lets start the conversation of this issue by addressing a simple, straightforward issue. Is Alzheimer's caregiving about you, the caregiver?

Or, is it about the person living with Alzheimer's? Whose feelings are more important?

Imagine that you fell into a coma for several years. You woke up and you asked immediately for a person you love. And the response you received was, they are dead. The response was so unsettling that you immediately fell back into a coma.

The next time you came out of a coma you asked again for the person you love. Once again you were told, they are dead. This happened over and over.

I want you to imagine what you would feel like when you heard those words? And then imagine, you heard those words over and over, they are dead, but every time you heard, they are dead, it was if you were hearing those words for the first time.

Each caregiver must decide, is the act of caring, about me, or is it about the person I am caring for?

I learned a long time ago in caring for my mother, Dotty, that something had to change, and I realized that something was me.

In order, to understand, cope, and communicate effectively with Dotty I had to start looking at each situation from her eyes. Once I was able to do this, I was able to make it to a new place. A place I call Alzheimer's World.

In Alzheimer's World, the communication is about gaining the trust of the person for whom you are caring. Sometimes, this requires the caregiver to consider how something they feel they need to say might impact on the person living with Alzheimer's.

Will your words make them feel sad, angry, confused, and cause them to start to withdraw from you and the world?

Would you want to hear bad news over and over and over as if you were hearing it for the first time? Would this make you feel happy or sad?

So for those of you that are grappling with this issue, is it appropriate to lie to a person living with Alzheimer's, I'll ask you this simple question?

Is it more important to be truthful or kind?

If you lie because you are being kind, how do you think you will feel with the cumulative acts of being kind? Kindness is a virtue. So I expect that over time you will feel good about yourself, not bad.

How do you view a person who is kind? How do you view a person that is cruel?

In Alzheimer's World the rules of communication are very different than they are in the "real world".

No one is going to look down at you if you are kind, even if you have to "lie" in order to be kind.

"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest."
-- Thomas Moore

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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,261 articles with more than 402,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room